Objectives: To establish the relationship between the functional impairment
experienced by Chronic fatigue syndrome (CFS) patients and the symptoms
frequently experienced by those with CFS; specifically cognitive impairment,
fatigue and orthostatic symptoms.

3 quotes from the paper.
At the end of the last quote, she specifically complains about the NICE guidelines again.

Looks like she would be a good person to encourage to challenge the NICE guidelines next time around, either under the banner of an ME charity or other some other "banner".

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This study confirms that orthostatic symptoms and
the underlying autonomic dysfunction that is found
frequently in those with CFS16,17,25–28 is the key
symptom to impact on functional ability.
Therefore, the focus of treatment of CFS should be
the orthostatic symptoms rather than the symptom of
fatigue. If orthostatic symptoms were treated and the
autonomic dysfunction was improved, it would potentially
decrease functional impairment in this patient
group and hence improve/increase their
functional capacity.

In summary, this study has confirmed that functional
capacity is reduced in CFS patients compared
to that of control subjects, and that functional impairment
in CFS is significantly related to the symptom
of autonomic dysfunction, therefore treating
autonomic dysfunction would be expected to improve
patients’ functional capacity particularly
in the upright position, and hence improve quality
of life. Future research should focus on treatments
of autonomic dysfunction in CFS, both
pharmacological and physiological in nature in
order to determine whether improvements in autonomic
function are paralleled by increased functional
capacity.

Functional impairment in all domains was significantly
associated with orthostatic symptoms, with
the most significant and strongest relationship
being in the domain of walking. Furthermore, the
multivariate analysis showed functional impairment
in the domains of walking, arising, eating and activities
to be independently associated with orthostatic
symptoms. Walking, arising and activities all involve
standing up or being stood upright. The autonomic
nervous system plays an important role when standing
upright in overcoming the gravitational effect of
blood pooling in the lower limbs, causing an imbalance
in arterial and venous blood pressures. If not
addressed, this would lead to insufficient perfusion
and malfunction of organs and tissues. The autonomic
nervous system overcomes this by increasing
sympathetic activity to induce vasoconstriction of
large veins in the legs in order to re-equilibrate
arterial and venous blood pressures by promoting
increased venous return. With autonomic dysfunction
these compensatory mechanisms may be impaired
and as a result standing up and related
activities would be adversely affected leading to
functional impairment. Our recent study confirming
impaired muscle bio-energetic function in CFS the
degree of which associates with autonomic dysfunction
37 could also explain why if muscles are functioning
sub-optimally this leads to inability to
perform activities of daily living. It could, therefore,
be predicted that if autonomic dysfunction was
treated in CFS patients, the domains involving standing
or an upright posture may show the greatest improvement
in functional ability. Despite this, the UK
CFS/ME NICE guidelines5 which recommend the investigation
and management strategy for those with
CFS does not include objective or subjective evaluation
of autonomic function in this important patient
group.

"The results of the multivariate analysis are shown in
Table 3. The results confirm that worsening autonomic
symptoms are independently associated
with increased functional impairment, whereas worsening
cognitive impairment or fatigue is not."

Senior Member

Thank you for this information! It makes a lot of sense. That is what my doc is aiming to help, the orthostatic symptoms. I think if he is successful in helping those symptoms then my quality of life will greatly increase.

Having it all sorted out in the way that you did made it so much easier to follow. Thank you, thank you, thank you...

(1) PROMIS HAQ—Patient-Reported Outcomes
Measurement Information System, Health
Assessment Questionnaire.18,19
This tool assesses the functional impact of CFS on
subjects, by measuring the functional and physical
ability of the subjects. The PROMIS HAQ was
derived from the HAQ and consists of 20 questions
that ask patients to rate their ability to carry out daily
activities on a 5-point scale of ‘0 = without any difficulty’
to ‘4-unable to do’. The 20 questions are
divided into eight domains of physical function:
dressing, arising, eating, walking, hygiene, reach,
grip and activity. The highest scoring question in
each domain is used as the domain score. All
eight-domain scores are added together, divided
by eight and multiplied by 25 to calculate the total
PROMIS HAQ score. Higher scores indicate worse
functional ability and therefore greater functional
impairment.

This is just questionnaire research. They are looking for correlations.

Basically it looks like orthostatic symptoms are more a "core" part of the condition than cognitive dysfunction.

But correlations are not causes. One may improve particular symptoms but other symptoms may remain bad as there may something that is causing both functional impairment and orthostatic symptoms (e.g. a virus, mitochondrial dysfunction, etc) that is not changed if you simply help orthostatic symptoms. So it's just questionnaire research.

Resting, If you respond as well as I did to treatment, then yes, your quality of life will greatly increase. My P.O.T.S. symptoms are gone. I catch myself standing up and not suffering. Although it's easier to overdo now, PEM is not as severe and long-lasting. I can even tolerate heat without becoming deathly ill. It's a different disease; however, cognitive dysfunction has not improved. Good luck.

It's not that a beta blocker made my life so much better, but I do call it one of my "life saver" drugs that I would never go without (though I'm going without during this pregnancy). I cannot wait to get back on a beta blocker. I've been off almost 2 years- went off right after my daughter's birth to breastfeed her because the doctor thought my taking a beta blocker during pregnancy made her sick and breastfeeding on it would make her sicker. Turns out she has Down syndrome and that was the problem, but I went through so much hellish harassment and testing due to the beta blocker that I chose to stay off it until done with this last pregnancy. I have gotten consistently worse off of the beta blocker. My heart rate is through the roof and uneven, my blood pressure gets scary low and when I rise scarier. Somehow, this is healthier for my baby. I've gotten used to not being able to stand anymore. Not bending to pick up my 19 month old. Not being able to see after I stand because there's no blood getting to my head. Panic attacks because my heart is going tachycardic and over 110 bpm.

Senior Member

It's not that a beta blocker made my life so much better, but I do call it one of my "life saver" drugs that I would never go without (though I'm going without during this pregnancy). I cannot wait to get back on a beta blocker. I've been off almost 2 years- went off right after my daughter's birth to breastfeed her because the doctor thought my taking a beta blocker during pregnancy made her sick and breastfeeding on it would make her sicker. Turns out she has Down syndrome and that was the problem, but I went through so much hellish harassment and testing due to the beta blocker that I chose to stay off it until done with this last pregnancy. I have gotten consistently worse off of the beta blocker. My heart rate is through the roof and uneven, my blood pressure gets scary low and when I rise scarier. Somehow, this is healthier for my baby. I've gotten used to not being able to stand anymore. Not bending to pick up my 19 month old. Not being able to see after I stand because there's no blood getting to my head. Panic attacks because my heart is going tachycardic and over 110 bpm.

I know a woman who has asked me to ask about on the problem of dealing with high blood pressure in ME/CFS. She had low blood pressure and fainted when she was younger with ME/CFS (she's ill now nearly 40 years). If anyone is happy for me to post on posts, feel free to PM me (I can delete your username if you prefer).

Senior Member

"and this too shall pass"

Ty for posting this Dolphin - the pressure sensor looks like a simple enough device. Reading all of this makes me wonder about the migraines that we get and how they might tie in. And I wonder if all with stiff vessels would have higher CRP??

Brown eyed girl was it you that got great relief with a beta blocker?? I want to remember as will be seeing a top notch cardiologist and will ask about it.

Hi Glen, The disparity between CFS with POTS and without is such that I still can't get over it (or put it into words, apparently). My personal experience is that I no longer get the "dead" or "road kill" feeling. Even in the midst of PEM, I don't feel as badly as I would if the POTS were untreated. I still have days when I need my power chair to get me from one end of the house to the other; my cognitive abilities are no better; pain still bothers me, but WOW! I can actually stand again. My stamina is better and my legs are gaining strength which in turn may help my very low
VO2Max. I take 1/4 tablet of Bystolic. Good luck with the cardio doc. BEG

I think you need to talk to people who have this illness with children. My general view would be that two healthy children reasonably close together are more than enough for most couples if one of them have ME/CFS.

I think you need to talk to people who have this illness with children. My general view would be that two healthy children reasonably close together are more than enough for most couples if one of them have ME/CFS.

I think he needs to talk to people who have this illness and children. I don't think I'll survive another pregnancy. And our daughter has Down syndrome, and while I consider her healthy, she does need extra care and I do have to deal with workers coming into my very messy house every week to work with her. They are a blessing, so is my little one, but I don't think I can do three, no. Two, don't know. One, still deciding!

Senior Member

I think you need to talk to people who have this illness with children. My general view would be that two healthy children reasonably close together are more than enough for most couples if one of them have ME/CFS.

I think he needs to talk to people who have this illness and children. I don't think I'll survive another pregnancy. And our daughter has Down syndrome, and while I consider her healthy, she does need extra care and I do have to deal with workers coming into my very messy house every week to work with her. They are a blessing, so is my little one, but I don't think I can do three, no. Two, don't know. One, still deciding!

Senior Member

Resting, If you respond as well as I did to treatment, then yes, your quality of life will greatly increase. My P.O.T.S. symptoms are gone. I catch myself standing up and not suffering. Although it's easier to overdo now, PEM is not as severe and long-lasting. I can even tolerate heat without becoming deathly ill. It's a different disease; however, cognitive dysfunction has not improved. Good luck.

What was done to rid you of POTS? Heat is a really big problem for me. I can't imagine being able to tolerate it again. That would be great since I am in a location that gets really hot and humid in the summer (actually May-Sept). It has been determined that my blood is not circulating properly and therefore not reaching my brain like it needs to. I thought that if the dysautonomia were better than cognition would get better. But you are saying this is not the case. I thought there was a direct link. I guess that is what the articles in the original post are trying to convey. Goodness this illness is SO complex.